Ectropion - When it couldn’t get worse, it can only get better

It is said that the eyes are the windows to one’s soul. I must admit that people suffering from ichthyosis, me included, have stunning eyes. It is still always difficult for me to look back and remember how my eyes were when I was little.

I had abnormal upper eyelids that turned inside out every time I tried to close my eyes firmly. Recently I have learned that the condition has a specific medical term: Ectropion.

Performance

It seems to be mean to myself but “performance” was the correct word to describe my case. I remember as clear as day a bunch of kids gathering in the middle of our common yard before lunchtime. We were playing some games while waiting for the parents' signals that lunch was ready. My brother was holding my face against his chest. Behind me other children were screaming at the top of their lungs “Do it! Do it again!”. For a moment my brother looked down to see me then he said to them “One! Two! Three!” At the same time he held my shoulder and turned it outside toward the children. They were screaming and laughing with great excitement the moment they saw my face. “Monster! Monster!”. All I did was just a hard blink.

The scenes were repeating a couple more times until my big sister arrived with a long stick on her hand. “Are you gonna stop that stupid joke and go inside for lunch or I’m gonna beat you?” Very quickly the crowd dispersed. My brother ran inside at a flash pace with my sister and her stick right behind him.

Later during the lunch time my mother told us to never repeat that again. My sister and brother did not say anything. I think I was 4 or 5 years old.

What can be its mechanism?

Hair loss involving the head and eyebrows in combination with xerosis and  erythroderma all over the scalp made it impossible for me to close my eyelids. When skin on the scalp becomes too thick and dry it pulls my forehead and eyebrows upward. That is when I normally have a severe headache. I think that is the principle mechanic explanation behind the fact that I have special slanted eyes compared to everybody else around me. Sometimes some people mistake me for other ethnic origins, instead of explaining to them I just smile and say some harmless jokes.

If you are wondering, I could still sleep almost normally. Before the age of going to school, I went to my mother’s kiosk every day. Whenever I fell asleep on the hammock, my mother put her conical hat or a handkerchief on my face. She said that it was to avoid the prying looks of the customers and their comments on me.

Dry eyes. To describe it more precisely, it feels like when you are riding a bicycle or even motorcycle without having any glasses. The difference is that I feel that even at slow speed (!).

Eye discharge is inevitable. Someday I woke up and could not see anything or open my eyes (which could never really be closed) due to eye discharge got dried between the upper and lower eyelids. During the day it was either my sister, my brother, or my mother who reminded me that I have something on my eyes. It might sound weird but I could not really feel it. My mother had told me every morning before I went to school “Remember to check your eyes regularly if there is any discharge there. Otherwise kids will make fun of you.”

How to soften ectropion effects?

The bad news is that I do not have any effective solution for this so far. The only thing I can do is to slow it down in order to gradually get used to the change.

In my specific case, ectropion aggravates in summer when it’s getting hotter. Since the onset with first symptoms I have to take care of the eye area more carefully by applying creams more often than normal. I need to be honest that eye massages do not really help in this case. If any, it can bring a relaxing effect that makes you feel better.

The plot twist is that ectropion and taking care of the eye area may keep you away from ageing.

To sum up...

In any case I must admit that everything has been better and better to me. However, ectropion remains an unpleasant symptom that whenever I start to forget about, summer will recall it and make sure I have to learn to deal with it over again every year.